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Friday, 11 July 2014

Leadership and Patient Advocacy for Research

WHAT MAKES
EFFECTIVE PATIENT ADVOCATE LEADERSHIP IN RESEARCH?

Recently,
I was invited to give a short presentation at the European Society of Oncology
Masterclass on Patient Advocacy in Baveno, Italy. I was a stand-in for Simon
Denegri who was moving house and can only say that I hope he moves house on a
frequent basis.

During the
event I spoke with a number of people including Jan Geissler, Susan Knox,
Markus Wartenberg, Estella Lecointe, Bettina Ryll. Amongst others I would
include are Lindsey Bennister and Roger Wilson. These are individuals who have a
defined roles in patient organisations locally, regionally, nationally and/or
internationally. They are all key Ieaders in the sphere of patient advocacy in
research across Europe.

I am
therefore carrying out my usual practice of gathering and writing my own
thoughts as to what I perceive this term leadership might mean in this context.
I have tried to identify some of the observable characteristics as we will need
to develop others to take on such roles in the future. I am beginning what I
hope will become a dialogue.

My
question, therefore, is simple...

How do we
empower others, from individuals to groups, to become leaders who are effective
in bringing about changes in research leading to better care, treatments and
services?

The
question is posed as an invitation to add, comment, disagree or at very least
begin thinking about what it means for your group or specific condition.

FROM ADVERSITY TO ADVANTAGE

The individuals, I have met, who are leaders for patient advocacy in research
have direct personal experience of illness that has become a fulcrum and drive
for action. They have, however, managed to create a physical space from the experience
that has moved them beyond telling the chronology of their personal story. The
narrative of what happened is subtly crafted into a refined and reduced summary
used only when necessary to set the scene, clarify the facts or to make a
point.

Their experience is a raison d'etre for helping others and not a repeated
story. Their complete interest is in other people’s current experience and how
they might be helped, not their own. Comment, opinion, praise or complaint
about their health encounter/s is rarely mentioned.

These leaders have a strong understanding that research is an essential and
integral answer to improving patient outcomes. This is especially true in the
rare conditions whose work perfectly triangulates research, treatment and
support in their meetings and conferences in a way that many others would love
to achieve.

I am always struck by the external calmness and assurance of these individuals
yet in more quiet conversation there is an internal impatience and steely
determination to make a difference. These leaders in patient advocacy have a strong
sense of purpose to advance their own group / organisation yet build a strong
interdependence with like-minded others.

It may seem inappropriate to some but I would suggest that we attempt to create
an advantage for others from what happened to us. By that I mean that we draw upon
experience to advantage and not ‘take advantage’.

From ADVANTAGE TO ATTITUDE

This leverage of advantage encourages, I believe, an attitude that is forward-looking
and mostly positive. A manner is adopted that allows these leaders to be apparently
comfortable in many different settings - patient communities, health
professionals, academic and clinical leaders to departments of health and
government representatives and ministers.

Leaders adapt to assimilate within these settings and promote dialogues whilst
remaining clear about their role and thereby retaining a certain distance. They
are willing to join the dots at different levels and in different places, learn and translate the information elsewhere.

There is a desire to find how to be effective and add value to research.
Inquiring minds and reflective thinking are evident in the use of questions and
the comments they make. These leaders listen and learn and are unfraid to
express an opinion even if it is uncomfortable to others.

In many respects my own experience gave me a freedom to express my views. I
felt was less encumbered and concerned with what others thought and more able
to live life to the full. The change in attitude changed the way I behave.

From ATTITUDE TO ACTION

One of the strongest characteristics I have observed, particularly for
effective patient leaders in the context of patient advocacy is that they get
on and get things done.

Policies and strategies are a means to an end not a laborious and long drawn
out process. They get to the point quickly to make a difference for others even
when the change takes a long time. Partnership working is normal yet does not
detract from completing tasks. Difficulties are to be addressed, overcome and
challenged to find solutions not an excuse to give up or do nothing. Websites,
emails and other forms of social media are used to communicate with a broad
variety of people.

These leaders act as catalysts to bring together senior academic and clinical
researchers with scientists, patients and their carers. The meetings I have
attended especially for rare diseases are about knowledge AND experiential
transfer and not about information giving.

These are people who ask questions that invite people to find a solution. The
use of confrontational questions and statements are used rarely and only after
significant and lengthy dialogue.

There is strong evidence of the use of transferable skills, knowledge and
experiences from competences and success developed in other fields of personal
and professional experience. The leaders appear to translate an issue into
another context to help interpret meaning or help others understand.

I have often thought that my experiences as a teacher supporting challenging
young people was a good background. Behavioural change is as important for the
school staff as it was for the young people and lies at the heart of developing a better relationship between experience and expertise.

So, what
are your views? What do you think we should be doing to grow 'patient leaders for research' for the
future?

1 comment:

I like your blog….it’s very informative. Patient engagement is key to improving outcomes. This paper gives you the six key factors for success: www.mobileprm.com/blog/wp-content/uploads/2014/12/Patient-Engagement-Key-Factors-for-Success.pdf